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disRespect: Ken Freidman on the Ottowa Conference

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by jace, Oct 10, 2011.

  1. jace

    jace Off the fence

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    http://www.radio4all.net/files/dialogue@radio.fm/1763-1-disRKennethFreedmanChronicFatigue59m52s.mp3

    Dr Kenneth Freidman on the future for Chronic Fatigue Syndrome research and treatment - thoughts from the IAME conference.

    This recording doesn't play properly until 12:00, and even then there are breaks in the recording until the second half. I'm transcribing that section, because Kenneth has some important stuff to say there. I just wish I could hear it all.

    Having played it right through and gone back to the start, it seems to be playing ok now. This is a partial transcript until 18:44, where it becomes a full transcript.

    Disrespect welcomes Dr Kenneth Friedman.


    04:00 Kenneth: "In the United States there was just a very recent - I'm going to use the term battle -with regard to the ICD because the United States government was going to place Chronic Fatigue Syndrome as a somatoform disorder as opposed to maintaining it as a neurological disorder so a group of organisations banded together and wrote a long, very scientific argument as to why Chronic Fatigue Syndrome should not be considered a somatoform disorder but rather a neurological disorder, and went to essentially an appeal hearing in Baltimore, Maryland on September 14th and presented their argument, their document, and what we were told is that based upon the strength of that document, and the scientific arguments, that in fact Chronic Fatigue Syndrome would be retained as a neurological disorder and not moved into a somatoform disorder. So we are very pleased with that but we certainly want to maintain that from this point going forward.

    05:17 Interviewer: Asks question about difference between Neuro and Somo disorders... Kenneth explains. Talks about prejudice against people who work in the field, the difficulty in getting disability insurance payments, and doctors under investigation for treating biomedically, including Myhill, and one other whos name is not yet in the public domain and is not given here either.

    10:00 Talks about his SOK presentation April 6th this year and the prejudice against researchers and patients and doctors. "The underlying thing (belief) is that if you don't have a test for it, then it doesn't exist" Goes on to talk about sectioned patients in England and forcibly removed children in the United States

    15.30 Music break

    18:44 Interviewer: "Did the conference hold out hope for any of these situations in its attempts to change the view of CF and of new research?

    Kenneth: I think there is - um - I think we all, both patients and researchers and healthcare providers left the conference with a much more positive attitude, and I think that because we all left knowing that it is still a puzzle and that we do not have all the answers or know all the pieces of the puzzle but that we are divising a method or methods of working with the pieces of the puzzle. For example, there are now at least four different definitions of Chronic Fatigue Syndrome, and we think we have a pretty good research definition of Chronic Fatigue Syndrome and a pretty good definition for diagnosing and treating Chronic Fatigue Syndrome.

    Interviewer: Care to share any of those?

    Kenneth: Well the research definition that seems to be used is something called the Fukuda case definition, Fukuda et al, which dates back to 1994, and that definition has been used since that date forward. It is much more restrictive a case definition than one would like to see used on patients, but it helps to define a patient population that is relatively suffering from similar symptoms and so therefore for research purposes you are apt to get results that are clearly defined

    Interviewer: So it's a conservative definition

    Kenneth: A conservative definition that may exclude some patients and therefore is not workable in a clinical situation.

    In the clinical situation, you want something that is more relaxed, or a more inclusive definition, and there are actually a couple of those. There's what's called the Canadian case definition, which was developed in 2003, 2004, and that seems to be very good at identifying patients and their key symptoms, and having them diagnosed as having Chronic Fatigue Syndrome and then there is a brand new one that has been developed in 2011 that is called the International case definition, and that one is essentially too new for anyone to have any sense of how it will fare, as either a patient case definition or as a research case definition.

    But what seems to have happened at this meeting is that there seems to be agreement that we will collect data or get information from each patient that will permit us to diagnose patients using several of these case definitions, (interviewer: really?) so that the information will not be lost, and so that we will then in retrospect be able to see which case definition works best, both in the clinical situation and in the research situation, and that's a much more intelligent approach than trying to squeeze all patients into one case definition, and obviously excluding some patients from treatment because they don't fit this particular case definition.

    One of the interesting papers that was presented at this meeting was by a clinician, I believe he's at GW, near Washington DC, was sort of a courageous thing, what he did was he took his Chronic Fatigue Syndrome patients, and he treated them for Lyme disease, and approximately a third of them improved, their physical condition improved when treated for Lyme disease. Its not sure exactly what that means. We're not sure whether that means that approximately one third of the patients in his patient population had Lyme disease, and were just missed with the Lyme disease diagnosis, but when they were treated for Lyme disease actually improved, or whether the actual, or their particular kind of Chronic Fatigue Syndrome is susceptible to the same sort of treatment with anti-biotics that are used in the treatment of Lyme disease, so that there is at least potential overlap between Chronic Fatigue Syndrome and other illnesses, and this is something that needs to be looked at much more carefully.

    24:15 Interviewer: And you spoke of multiple causes too, or multiple origins?

    Kenneth: Yes, I do believe that there are multiple origins, and I believe that the majority of clinicians and researchers at this meeting were coming to this point of view. Because there are a number of infectious agents that have been found to be initiators of the illness cycle in patients. One of the names, former names of Chronic Fatigue Syndrome was chronic Epstein Barr Virus, and now there is work to show that patients that get sick with other viruses also develop Chronic Fatigue Syndrome. HHV6 for example, and enterovirus. If patients do not recover from these viral infections they can develop Chronic Fatigue Syndrome. So it would appear that Chronic Fatigue Syndrome is essentially the body's response, or perhaps the body's immunological response to an infection that isn't cleared from the body, which might argue that the people in whom this occurs have immune systems that are unable to clear these infections and therefore Chronic Fatigue Syndrome represents an immune system abnormality or defect because these patients lack the ability to clear these infections from their body.

    Interviewer: And they have an immune system what? Inability?

    Kenneth: Inability or defect to clear these infections from their body and so they persist.

    Interviewer: Yes, I think immune abnormalities have long been found in Chronic Fatigue patients haven't they?

    Kenneth: Immune abnormalities have been found. The problem is that there isn't one consistent finding. And perhaps the reason for that is that there are these sub-categories of Chronic Fatigue Syndrome patients and that if we define the right subcategory of Chronic Fatigue Syndrome patients then we may be able to find a clear, uniform, distinct pattern of immunological abnormalities in a subset - in this particular subset of Chronic Fatigue Syndrome patients.

    Interviewer: So then the job becomes defining the subsets?

    Kenneth: Absolutely. And researchers are beginning to turn their attention to that, and some of the questionnaires that are being developed to screen Chronic Fatigue Syndrome patients are beginning to ask questions that will assist us in being able to differentiate the subgroups and perhaps the infective agents that are precipitating Chronic Fatigue Syndrome in these patients.

    27:20 Interviewer: So this is a hypothetical, broad immune response to neurological agents of possibly many origins with a common human adaptation to it which involves fatigue and neurological abnormalities and consequences - am I correct? Is this what's hypothesized?

    Kenneth: Well the agents are believed to be infective, and they don't necessarily have to be neurological, although some of them may be. There is another theory that's beginning to go around now, and that is that if infectious agents are not cleared from the body they can establish themselves in one or more of what's termed the body systems, for example the gastrointestinal tract or the central nervous system or in the cardiovascular system so that we are now beginning to see at least the suggestion that things like cardiovascular disease or hardening of the arteries or the deposition of plaque in the arteries is not only caused by the deposition of cholesterol, but might also be the reaction to some bacteriological agent that has been deposited in the blood vessels and therefore the plaque is an attempt to cover up or seal off those kinds of infections. And so Chronic Fatigue Syndrome in an analogous manner may be a reaction that is akin to that kind of mechanism

    29:15 Interviewer: Yes, there are so many effects, and now you are saying there are so many agents

    Kenneth: Well, the idea is to tease them out. I'm pretty exited by it because I think what we are beginning to see is a whole new area opening up to us about how infection invades the body and the consequences of it. And so that what we discover about chronic, what I would call hidden infections in the body will be applicable to a whole variety of diseases and answer a lot of questions that have been around for a long time but have never been answered before. And this will give us a tool, a mechanism of possibly providing answers to these questions.

    30:00 Interviewer: What else came out of the conference that you took away?

    Kenneth: What I took away from the conference is first of all the willingness to work with multiple questions that lead to the possibility of diagnosing patients by multiple case definitions. I think there is a renewed excitement in the involvement of the brain in Chronic Fatigue Syndrome because there is more evidence of different kinds. I think there is also a lot more work in the area of genetics and Chronic Fatigue Syndrome. People are looking ate genes being turned on, being turned off in what I call the subsets, or some subsets of Chronic Fatigue Syndrome versus "normal subjects". They are being able to find differences, or particular genes being turned on and turned off. And based upon that they are looking for proteins, or protein differences, or differences in concentrations of proteins between patients and normal controls. And so we are beginning to see what the differences are between normal controls and patients with Chronic Fatigue Syndrome. And this is all very exciting because eventually we will be able to understand the differences between normal healthy people and Chronic Fatigue Syndrome patients by understanding the difference in the molecules that they are producing. And once we do that, we should be able to alter, or change back, or normalise the molecules that they are producing that are producing their symptoms.

    32:15 Interviewer: Wow! And that sounds quite in line with current research too, it doesn't sound far afield

    Kenneth: No, it's not far afield, and what it means is that there is new excitement, and that the field of Chronic Fatigue Syndrome is keeping up with the more advanced technologies and people are beginning to apply those technologies to the field of Chronic Fatigue Syndrome. Not only are they beginning to apply it to the field, but they are also obtaining results, significant results that will eventually lead to better treatments.

    music break until
    36:25 Interviewer: Where's the leading edge of the research and the treatment right now:

    Kenneth: I believe the leading edge of research and treatment will be in two area. One will be in the neurological, in the involvement of the brain, and the other will be in the genetics and the proteins, or what's called the proteanomics of Chronic Fatigue Syndrome, those to me at this point seem to be the two most promising areas. And again, those are the areas that are keeping up with the most sophisticated of treating all diseases, and trying to make gains in all diseases

    Interviewer: Which is why you said that it's keeping up - in other words, its in the mainstream of research to treat diseases

    Kenneth: That's correct. At the meeting we had people, granted mostly from the United States, some from Canada, some from Norway, Japan, Australia, New Zealand, there was one fellow there from France, I'm afraid I'm going to leave someone out and I may be chided for it but essentially the research is coming in from all over the world. There's a fellow there from Spain, who presented a lovely paper in a session there that I chaired, so I believe that it's all over the world.

    38:00 Interviewer: There's an initiative, the Chronic Fatigue initiative, that's attracted prominent professionals that have been treating Chronic Fatigue Syndrome some of them for as long as 20 - 25 years, can you tell us anything about that?

    Kenneth: Well the Chronic Fatigue Initiative is relatively new, and I don't think that they are at the point where they are actually expending grants. The board of the IACFS/ME did meet with the folks that run the initiative, and what we were told is that they wish to stimulate Chronic Fatigue Syndrome research, and they are at the point where they are gathering information to essentially determine the status of Chronic Fatigue Syndrome research, and what they will be doing is formulating a series of questions which they believe will most quickly and expeditiously provide initial research results that will stimulate other research that will provide treatment and get at the cause of Chronic Fatigue Syndrome. Once they have formulated those questions, they will put out a request for proposals to address those particular questions about Chronic Fatigue Syndrome. It's going to be a very targeted program based upon what they feel will be the most productive research challenges that need to be addressed in order to quickly get to treatment and potential cures of Chronic Fatigue Syndrome.

    And I should add that there is another organisation that is coming out of the gate, if you'll permit me to use that term, and that is called Simmeron Research which is headed up by a group of people who are of a similar mind, namely to promote research into Chronic Fatigue Syndrome that will yield results in a short time-frame, and the director of this program is a well-known internist by the name of Dan Peterson. Dan has been working with Chronic Fatigue Syndrome patients for I guess somewhere between twenty-five and thirty years. (int: He's in Nevada, isn't he?) Yes, yes, Incline Village. So he has been I guess the resource that is responsible for the formation of Simmeron and again, this is another venue for stimulating research. And of course we also have the Whittemore Peterson Institute where Annette Whittemore, also with the assistance of Dan Peterson have established a research institute, and they certainly have shaKenneth up the field of Chronic Fatigue Syndrome and stimulated a lot of research about Chronic Fatigue Syndrome with their initial finding of XMRV in a large percentage of a defined patient population with Chronic Fatigue Syndrome.

    These are new players, I would call them, to the field of Chronic Fatigue Syndrome that will bring an element of excitement, and hopefully will accelerate Chronic Fatigue Syndrome research, not only by virtue of their own investments into Chronic Fatigue Syndrome research, but also by stimulating the Federal Government to pay attention and to also put in more funds to Chronic Fatigue Syndrome in order to balance out these private research efforts.

    42:10 Interviewer: You hear that? Federal Governments everywhere, pay attention!

    You mentioned XMRV too, and I think that was dealt with ambivalently at the conference wasn't it - there was one rese...

    Kenneth: Oh, I would not characterize it as ambivalence, I would say that there are a number of findings that put the initial 2009 Science paper into doubt. The Whittemore Peterson Institute and, I would characterize her as the lead researcher, Judy Mikovits, still maintain that there are many questions generated by their initial finding that have not been addressed by the papers that have come out subsequently, that tend to characterize their initial findings as being negative, and that before the issue of XMRV is fully understood, that much more research has to be done, that the WPI is continuing to do research on XMRV, and so are many other laboratories, in an attempt to understand what is the relationship of XMRV to Chronic Fatigue Syndrome, and now, if the results presented at this particular conference are to be believed, the relationship of XMRV to a lot of cells in culture, and possibly even to a lot of vaccines that are currently being used throughout the United States and throughout the world.

    The situation is far from resolved. It begs to be resolved. And hopefully it will be resolved.

    44:30 Interviewer: So what I describe as ambivalence, is described by people like Judy Mikovits as a need to resolve unresolved implications that the research has uncovered. (Kenneth: Correct.)So ambivalence would not describe the researchers attitude at all.

    Kenneth: No, I don't think there is ambivalence. It depends upon how you wish to view Judy's data. If you look at it one way, it pertains to Chronic Fatigue Syndrome, if you look at it another way it has consequences throughout the world and throughout laboratories who do tissue cultures throughout the world. And there was one report there that XMRV is a contaminant that has contaminated commercial products that are used in tissue culture. And if that's the case, if that proves to be the case, then the implication is of tremendous impact and of tremendous consequence to tissue culture and all the research that is done using tissue culture, and if that is the case then Judy Mikovits needs to be applauded for what she has done in terms of uncovering this contamination, which is far beyond anyone's initial expectation.

    45:50 Interviewer: OK, so the relationship of XMRV to chronic fatigue is still unestablished

    Kenneth: The relationship to Chronic Fatigue Syndrome is still unestablished, and the initial - I would go as far as to say the initial hypothesis has been called into question, but it remains unresolved

    Interviewer: What would you like to summarise your experience at the conference with before we close?

    Kenneth: I think it was a great conference. I think that the world is paying more attention to Chronic Fatigue Syndrome. I think that Chronic Fatigue Syndrome as demonstrated at this conference is there is a huge amount of very promising data. There was a summary of the conference provided by Tony Komaroff, which is a name for people that have been following Chronic Fatigue Syndrome research will be familiar with. He's a well respected Chronic Fatigue Syndrome researcher and commentator, and he provided the overall summary, and at the end of it he was asked "Which of these projects do you think deserves the most attention" and his statement in response was that they all do. They are all exceedingly promising results and I agree with that.

    The only thing I would add is that these are all exceedingly promising results done on relatively few patients with relatively or comparatively relative small budgets and that there needs to be an infusion of much more money into these studies, now that their promise has been shown. I think that as we have now all learned, based on the jumping in of these few new benefactors to Chronic Fatigue Syndrome is that we cannot rely solely on federal governments to support Chronic Fatigue Syndrome.

    That we need benefactors but benefactors are few and far between, and so I believe that the patient population, or patient populations throughout the world really do need to get more involved and support these kinds of research. And now with the advent of what is termed social media, people are getting on social media and saying "tomorrow is my xx birthday, and instead of sending me gifts because I am a patient, send money to this or that research institute or send money to this organisation to fund clinical care services.

    And that I think is the only way that we will be able to achieve the magnitude of funding that we will need to be able to make Chronic Fatigue Syndrome understood in terms of pathophysiology, to make it treatable, with definitive treatments in a time frame that will benefit the patients who have it now

    49:25 Interviewer: I appreciate that point of view, it's quite compelling. Perhaps, only perhaps because I'm not personally acquainted, I understand the attitude with our federal government is that we are not going to be able to meet our need for skilled workers in the near future by immigration alone, that we need to expand the number of people who work past retirement, and that in that light they might be willing to look at something like chronic fatigue as limiting a great number of the population who could contribute to the workforce and the tax base in the future

    Kenneth: Well it would be wonderful if any federal government would be willing to put more money into Chronic Fatigue Syndrome. I think that in most countries it's the patients who have to advocate for greater federal funding. Not only do we need to keep older researchers working in Chronic Fatigue Syndrome but we need to somehow stimulate new researchers into the field of Chronic Fatigue Syndrome which raises the whole issue of how do you do that? Unfortunately Chronic Fatigue Syndrome because it is an underfunded area of research, most young researchers when looking for a career in research, are not going to go there, they are going to go to the better funded areas because that is where they see that they can earn a living. I think that we need to address the concern that Chronic Fatigue Syndrome is a viable area of research by demonstrating that there is funding for it and consistent funding for it. In the United States several years ago we had five centers of excellence, and then precipitously the government said "We're not doing this any more".

    51:22 Interviewer: And they were centers for research, for promoting research?

    Kenneth These were centers for research, for research and clinical care, spread throughout the United States, and the federal government, the National Institute of Health who funded it, decided they were not going to do it anymore, and so the centers closed. The people who did the research in the centers, who were senior researchers, junior researchers laboratory research associates and technicians, were then without funds, were without salary, so what were they to do? They were forced to go into other areas, and I suspect that if one ever did this study they were loath to coming back

    Interviewer: Well I understand we established a new center in BC in British Colombia in Canada for chronic fatigue, but I don't know..

    Kenneth: Yes, and when it was done, I clipped the announcement of it that I received, and I sent it to the Center for Disease Control and I said "If British Colombia can do this, why can't we?" (int: yes exactly, exactly) so I applaud the province of British Colombia, and I hope that other provinces can do the same. And I hope that the Canadian experience will embarrass governments in other countries to do the same

    Interviewer: I hope you're right! I appreciate all the time you've spent with me, it's been a very thorough interview.

    Kenneth: Well I hope that I have been able to both illuminate, and also to provide hope and to provide inspiration and to provoke enthusiasm of the Chronic Fatigue Syndrome community that you serve, in Chronic Fatigue Syndrome research and patient care, and to please not give up on us - the educators, the researchers, the clinicians because we really are trying our best to meet the needs and advance the field of Chronic Fatigue Syndrome.

    Interviewer: And again, I thank you for your time.

    Kenneth: You're quite welcome.

    permission to repost granted
    -------------------------
    Doing this transcript brings up several issues for me. The plan to use four (four???) different case definitions, with Fukuda for research. I'm really not impressed with Fukuda - one study showed that 40% of patients diagnosed that way had major depressive disorder. I think the CCC and ICC are far more accurate in defining a physical disease. Still, Fukuda beats Reeves 2005 any day.

    The multiple origins, multiple subsets bit just shows to me that the definition used is too loose.

    The call for patient funding of research - I know a lot of us got behind Dr Judy and the WPI, but I'm not sure I want to back a Chronic Fatigue Initiative, when likely they will ignore the retroviral elephant in the room. I'm happy for other research to go on, but isn't it all going down rather well-trodden roads?

    I'd back a clinical trial of ARV's any day, with the right people in charge. In the States or anywhere. That's a big piece of the puzzle, not mentioned here. Obviously it would have to be well defined.
  2. Dolphin

    Dolphin Senior Member

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    Thanks very much for doing the transcript - very much appreciated.

    What study do you have in mind? I think the study you had in mind with regard to the 40% used Reeves 2005:

  3. ixchelkali

    ixchelkali Senior Member

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    Jace, thank you for all your work in transcribing this; it was very helpful to me. It's easier for me to follow something written, because I can easily reread a sentence until the meaning penetrates.

    I don't agree 100% with Dr Friedman, but overall, I'd say it was a very good interview. This is the kind of material I'd like to see more of in the media. Unfortunately, ME/CFS is such a complex disease and has such a history of misinformation to overcome, that it doesn't lend itself to sound bites.

    I did think his statement about the Fukuda definition being more restrictive than you'd like to see with patients, odd, since it's my opinion that the main problem with Fukuda is that it is too broad. And saying that the CCC and ICC definitions are looser and more inclusive (and therefore more useful in clinical practise) seems really peculiar. I find it troubling and disappointing, because I am especially hoping that the IACFSME will endorse the use of the ICC as the new standard definition for research. I think it's appropriate to have a narrower definition for research than you do for clinical diagnostics, because it's helpful in research to have "classic" patients, while in practise you still want to pick up the outliers. So if ME/CFS patients fall into a bell curve, you'd want to do research primarily on those in the middle of the curve, but you'd still want to treat the whole bell.
  4. Ember

    Ember Senior Member

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    Still more disinformation about the ME-ICC coming out of the IACFS/ME Conference!

    First, Lenny Jason (according to Cort) challenged the ME-ICC this way:

    Jason - lots of symptoms are what doomed Holmes criteria. Jason's ME criteria had 4 parameters and required acute onset... Jason suggests using more symptoms (eg ICC) runs the danger of bringing in people with pscyh diagnoses (eg Holmes criteria)

    (Tom Kindlon immediately countered, "I question claim more symptms brings in more ppl with psych diagnoses-a proper subset will have no extra cases.")

    Then James Deagle, Editor-In-Chief, The Journey: A publication of the National ME/FM Action Network, reported that "Bruce Carruthers, M.D. (a medical advisor with the National ME/FM Action Network) presented the 2003 Canadian Consensus Criteria, which he co-authored, and is currently used worldwide as one of the standard definitions for ME/CFS.

    And now this from Ken Freidman!

    My only reluctant explanation is that the ME-ICC must have upset some people's apple-carts. Perhaps it undermines further work on the CCC or on the IACFS/ME Practice Manual.

    I certainly expected better.
  5. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Thank you, Jace, for your hard work in transcribing the audio.

    There are one or two points that need further clarification in Dr Friedman's comments above about the ICD-10-CM coding issue (with permission to repost with link and attribution):

    The existing (and long-standing) proposal for ICD-10-CM is that Chronic fatigue syndrome is proposed to be coded not as a somatoform disorder but in Chapter 18 Symptoms, signs and ill-defined conditions as "Chronic fatigue syndrome NOS", under

    R53 Malaise and fatigue

    [...]

    R53.82 Chronic fatigue, unspecified

    Chronic fatigue syndrome NOS

    Excludes1: postviral fatigue syndrome (G93.3)

    -------

    Chapter 18 Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified (R00-R99) includes "symptoms, signs, abnormal results of clinical or other investigative procedures, and ill-defined conditions regarding which no diagnosis classifiable elsewhere is recorded."

    The "R code" chapter is a chapter which contains symptoms and signs for many types of disorder.


    This is not the ICD-10-CM Mental and Behavioural chapter which is:

    Chapter 5 Mental and behavioral disorders (F01-F99)

    Chapter 5 includes: disorders of psychological development and has a class 2 exclude for the entire R code chapter

    "Excludes2: symptoms, signs and abnormal clinical laboratory findings, not elsewhere classified (R00-R99)"


    So although the R code chapter is not, in my opinion (and in the opinion of the May 2011 CFSAC Committee who voted unanimously against CFS being retained in the R code chapter) a good place for CFS to be coded, it isn't the case that CFS is currently proposed to be classified under Somatoform Disorders (classified in Chapter 5).


    The other point is this:

    At the September 14 ICD-9-CM NCHS Committee meeting, the Committee made a suggestion for the placement of CFS under G93.3. Their suggestion is set out on Page 11 of this Proposal document

    http://www.cdc.gov/nchs/icd/icd9cm_maintenance.htm
    http://www.cdc.gov/nchs/data/icd9/TopicpacketforSept2011a.pdf


    Option 2 (proposed by NCHS):

    G93 Other disorders of brain
    Revise G93.3 Postviral and other chronic fatigue syndromes

    Delete Benign myalgic encephalomyelitis
    Delete Excludes 1: chronic fatigue syndrome NOS (R53.82)

    New code G93.31 Postviral fatigue syndrome
    Benign myalgic encephalomyelitis

    New code G93.32 Chronic fatigue syndrome
    Chronic fatigue syndrome NOS

    Excludes2: chronic fatigue, unspecified (R53.82)

    ------------

    Dr Friedman has said "...what we were told is that based upon the strength of that document, and the scientific arguments, that in fact Chronic Fatigue Syndrome would be retained as a neurological disorder and not moved into a somatoform disorder."

    But a decision has not yet been agreed by the Committee. The Committee is still accepting letters in response to the Coalition's proposal and its own proposal. The closing date for comments to the Committee is November 18.

    So please don't feel that there is no need to send in comments because a decision has not been made or finalised. A decision is expected to be announced in December.


    As I've posted the proposal of the NCHS Committee, I'd like to add that if I were submitting a comment, what I would prefer to see is the three terms coded to three separate codes.

    I would reject the inclusion under G93.32 of a "Chronic fatigue syndrome NOS".

    I would want Excludes2: chronic fatigue, unspecified (R53.82) as a class 1 exclude - not a class 2 (the difference has been set out in another thread).

    I would want to see neurasthenia (F48.8) specified as a class 1 Exclusion to all three category terms, G93.31, G93.32 and G93.33 that would be coded under the G93.3 Title term.


    So if I were submitting a preference it would be for:

    G93 Other disorders of brain

    G93.3 Postviral and other chronic fatigue syndromes (something other than this Title term that would encompass both viral and non viral insult and ideally not include the fatigue word. But ICD-10-CM Committee may be restricted in how much they are permitted to deviate from an existing ICD-10 Title term since they are obliged to work within the strictures of WHO classificatory rules for ICD-10, from which ICD-10-CM is being developed.)

    G93.31 Postviral fatigue syndrome

    G93.32 Myalgic encephalomyelitis (benign)

    G93.33 Chronic fatigue syndrome

    Excludes1: chronic fatigue, unspecified (R53.82)
    neurasthenia (F48.8)

    ---------------

    With apologies, Jace, for veering a little off topic, but I felt these points ought to be clarified.

    The proposals of the Coalition4ME/CFS can be found on their website and are set out on Page 11 of this document:

    http://www.cdc.gov/nchs/data/icd9/TopicpacketforSept2011a.pdf

    In order not to have to go over old ground in other threads, when scrutinising the proposal of the Coalition, please note that the Coalition proposes that Benign Myalgic encephalomyelitis remains under G93.3 Postviral fatigue syndrome and above Chronic fatigue syndrome.

    The reason that it does not appear on their proposal, as set out on Page 11 of the PDF above, is because the Coalition followed the format for submission of proposals to NCHS, which requires that deletions are specified, additions are specifed, revisions are specified but that category terms that are proposed to remain as per current proposals do not require to be specified since no change is being requested for that term. (I hope this explanation clears up confusion that has arisen in other threads where the issue of the coding of CFS in ICD-10-CM has been discussed.)



    Suzy Chapman
  6. Dolphin

    Dolphin Senior Member

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    I don't have time to go into a long discussion on criteria at the moment. But I thought I'd point out, as I'm not sure how well it is known, that the revised Canadian criteria (Jason et al., 2010) seem to do exactly the thing you suggest. It was a concern of mine with the initial Canadian clinical criteria. I haven't thought enough about the ICC to know if it could be a concern there or not.

  7. Ember

    Ember Senior Member

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    Jason's Clinical and Atypical (along with ME/CFS-Like and ME/CFS in remission) criteria are less restrictive than the CCC, Dolphin. If more restrictive criteria are needed for research, that's what the ME-ICC provides.

    Ken Friedman's saying that the CCC and ICC definitions, compared with Fukuda, are looser and more inclusive (and therefore more useful in clinical practice) seems really peculiar, to say the least. I too find his statements disappointing and troubling.
  8. Dolphin

    Dolphin Senior Member

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    Jason's Clinical, Atypical etc. are specifically the ones that paper is saying not be used for research. It then has its research definition which is the most restrictive criteria in that paper and are akin to the CCC.

    I posted that in reply to ixchelkali who pointed out the value of having strict criteria for research but one doesn't necessarily need as strict criteria for everyone (in clinical practice):
    cutting some people off could be bad for them (note: I'm not personally worried as for the last 17 years I'm severely affected and would satisfy all the criteria; but I do know for the first few years of my illness, before I was severely affected, unless somebody made me do multiple exercise tests, I wouldn't have satisfied strict criteria so I can see a value in having a value in different gradations of criteria; I could see how other people could lose out if only one, strict, criteria was used in clinical practice).

    I'm not sure if that many people have been saying that the full CCC weren't strict enough for research, but then haven't had time to follow discussions too closely in recent months (as have been busy with a paper) - it's not a complaint that particularly stood out before the ICC came out.

    I, too, find the statement by Dr. Friedman a little odd. Although he is only repeated what I have heard others say: the Canadian Clinical Criteria have clinical in their title which may have caused the impression for some people that they're not suitable for research, especially when they haven't been used much for research; while the Fukuda criteria remains the main criteria used in research (however, a few papers using the CCC have popped up in recent times).
  9. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I have only heard CCC used as standing for Canadian Consensus Criteria, not "Clinical."
  10. Dolphin

    Dolphin Senior Member

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    Perhaps that is how the acronym is used (it's not an acronym I recall having seen much of in the research literature). However, the criteria are often seen as clinical criteria. If one looks at the original Carruthers et al (2003) criteria paper, it has clinical in the title,
    and the editorial says:
    And here's the abstract to the Carruthers et al (2003) paper itself:
    So I have heard them a lot being described as clinical criteria which is maybe why I spelt out CCC that way when it's not how it is generally used.
    Anyway, they have occasionally been used in research and the Jason et al. (2010) paper was an attempt to make them easier to use in research/operationalise them for research. Whether they are better or worse than the ICC for research I haven't decided myself yet. But I think the gradation system in Jason et al (2010) hasn't got a lot of focus so I like to draw attention to it.
  11. redo

    redo Senior Member

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    This is fantastic news. And I think we've got a lot to learn and gain from it. Both diagnostically (getting to bottom of mechanisms behind the disease) and just plain getting a lot better while we have the disease... Another unblinded study showed that 59% improved with another antibiotic. Those numbers are great, and the two BIG questions haven't been asked: "Why?" and "How many would improve in a blinded study?".
    www.translational-medicine.com/content/4/1/34

    If someone who have got connections to a ME organiztion is reading this, please do confer with them. Ask if it's possible to set up a simple pilot trial. 20 ME patients, half get placebo half get antibiotics. It would be really cheap, relatively safe (at least compared to CBT) and we could learn a LOT from it. I think combination treatments (at least two antibiotics) would be needed. Get a lyme doctor in on it, get a ME doctor in. Get 20 patients, and not long after we'll have a double blinded, randomized, placebo controlled trial available!

    If, let's say half of those receiving antibiotics would experience a serious symptom relief, it would be vital (and perhaps even enough) to stop the money flow being drained into the black hole of CBT like ME treatment. And if it helps, it would be an alternative for ME patients who want to improve...

    So, if anyone knows someone in ME organizations; why not go for it?
  12. jace

    jace Off the fence

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    I find I need to see typescripts in order to take in such a long interview, so I made the transcription for myself, as well as to share. So no need for thanks, people. :angel:

    Suzy, thank you so much for expanding on the situation re the ICC-10-CM. This is an important fact, that we have until 18th November to make submissions to the committee. My preference is the same as yours, as I have said elsewhere.

    ------------------------------------------------------​

    G93.3 Postviral and other chronic fatigue syndromes (or Postviral and chronic diseases of the brain and spinal chord?)

    G93.31 Postviral fatigue syndrome

    G93.32 Myalgic encephalomyelitis (although I fail to see, with four people from our small online community dying in the last three weeks including one of 18 and one in her 20's, that it can seriously be called benign)

    G93.33 Chronic fatigue syndrome

    Excludes1: chronic fatigue, unspecified (R53.82)
    neurasthenia (F48.8)
    --------------------------------------------------------​

    But what does what I want signify? I have supported the committee's option two publicly.

    The key improvement made in the ICC is the redefinition of the key symptom of ME, PEM transposing to PENE:

    This tighter definition makes the ICC superior to define a tight cohort, IMHO. I like getting rid of CFS, as well, of course.
  13. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Jace wrote:


    As you're probably aware, Jace, there are historic reasons for the application by WHO, Geneva, for the prefix "benign" before certain ICD terms which related to the collection of data by WHO for epidemic diseases, indicating that a disease did not kill more than a certain percentage of its victims. Though its use is not consistent within ICD, and there are also medical terms that include the word "benign", for example, "benign intracranial hypertension" (cf: "malignant intracranial hypertension").

    The prefix "Benign" was applied to Myalgic encephalomyelitis when the term was first included in the long since retired, international version of ICD-9, which was published in 1975.

    ( A history of the inclusion of the terms PVFS, (B) ME and CFS in ICD-9, ICD-10, ICD-9-CM, and the ICD-10-CM proposals as they had stood in 2001, can be found in this two page 2001 CDC Summary document: http://www.co-cure.org/ICD_code.pdf )


    The NCHS committee responsible for the adaptation of international ICD-10, specifically for US usage, won't necessarily have the authority to drop the "benign" prefix without sanction from WHO, Geneva.

    At the September 14 meeting, discussion of the issue of the potential for dropping "benign" is recorded in the summary report, thus:

    http://www.cdc.gov/nchs/data/icd9/2011SeptemberSummary.pdf

    Extract from Page 2


    "Though the requestor had asked to have the term benign deleted from inclusion term benign myalgic encephalomyelitis, NCHS indicated it should remain somewhere at G93.3 to maintain compatibility with WHO ICD-10. Comments on this indicated that it should be added to proposed new code G93.31 with benign as a nonessential modifier."​



    The Clinical Modifications of ICD-10 that Canada, Australia and Germany have independently adapted from ICD-10 retained the "Benign" and the Alpha draft for ICD-11 also retains the "Benign" prefix.

    With the development of ICD-11, WHO Geneva, or rather ICD-11 Revision Topic Advisory Group for Neurology has the opportunity to review the retention of the prefix "Benign" as applied to Myalgic encephalomyelitis. This is an issue that could be proposed when the new Alpha drafting platform is released and when registered stakeholders are able to comment on proposals (and this has been delayed since May, this year and is still not ready).

    But any arguments tendered in support of the dropping of "Benign" from Myalgic encephalomyelitis (and WHO Revision will require proposals to be supported by evidence) will need to be carefully considered since there are few published studies on cause of death in patients diagnosed with ME or CFS, some of whom will have co-morbid conditions cited on their death certificates, some of whom will have been suicides.


    The application of the prefix "Benign", as applied originally by WHO in relation to the collection of mortality and morbidity statistics may not translate to how the word "Benign" is perceived by patients. But I agree, this is an issue that needs discussion when the ICD-11 Alpha is released for comment.

    Note, the Alpha platform currently viewable by the public is not the platform that will be used to comment via and it comes with WHO caveats and cannot be relied upon as it is in a state of flux, may contain errors and is incomplete.

    Suzy Chapman
  14. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Well I can't support the NCHS's suggestion in Option 2

    because of the inclusion of Chronic fatigue syndrome NOS in addition to Chronic fatigue syndrome

    because of the use of class 2 Excludes

    and because of the omission of a Class 1 Exclude for Neurasthenia (F48.8)


    As a reminder of the difference between the two Excludes classes:


    https://www.cms.gov/ICD10/Downloads/6_I10tab2010.pdf

    ICD-10-CM TABULAR LIST of DISEASES and INJURIES

    Instructional Notations


    [...]

    Includes:

    The word "Includes" appears immediately under certain categories to further define, or give examples of, the content of the category.

    Excludes Notes

    The ICD-10-CM has two types of excludes notes. Each note has a different definition for use but they are both similar in that they indicate that codes excluded from each other are independent of each other.

    Excludes1

    A type 1 Excludes note is a pure excludes. It means "NOT CODED HERE!" An Excludes1 note indicates that the code excluded should never be used at the same time as the code above the Excludes1 note. An Excludes1 is for used for when two conditions cannot occur together, such as a congenital form versus an acquired form of the same condition.

    Excludes2

    A type 2 excludes note represents "Not included here". An excludes2 note indicates that the condition excluded is not part of the condition it is excluded from but a patient may have both conditions at the same time. When an Excludes2 note appears under a code it is acceptable to use both the code and the excluded code together.

    -----------

    The NCHS Committee's suggestion was:


    G93.3 Postviral and other chronic fatigue syndromes

    G93.31 Postviral fatigue syndrome
    Benign myalgic encephalomyelitis

    G93.32 Chronic fatigue syndrome
    Chronic fatigue syndrome NOS
    Excludes2: chronic fatigue, unspecified (R53.82)

    -----------


    Suzy Chapman
  15. Ember

    Ember Senior Member

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    Jace, can you help me understand why PWME don't seem to care? Is the "garbage in, garbage out" phenomenon in research not well understood?
  16. taniaaust1

    taniaaust1 Senior Member

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    Thank you for transcribing this.
  17. jace

    jace Off the fence

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    Thank you for your comprehensive explanations, Suzy. I could never aspire the the professionalism you exhibit so faultlessly.

    We know that pwME often have a co-morbid condition or suicide recorded on their death certificates, when the real reason is this disease. I have no idea how to change that, barring the long process of re-education of the real meaning of this disease, and finding and getting accepted an incontrovertible biomarker for ME aka CFS, which of course is the road we are on.

    Hi Ember. PwME come from all age groups, intelligence ranges, races and social groups. Some of us are articulate, bored in our sickness confinement, and reach out to engage here. Others are overwhelmed by coping with the illness, and the social stigma that having this particular disease brings. I would suggest that one would have to be a fairly determined individual to keep your head above the parapet of one's private circumstances, to be able to engage in the wider world while suffering with Myalgic Encephalomyelitis.

    Don't blame them. It is better to light one small candle than to curse the darkness.
  18. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    You're welcome, Jace.

    Please feel free to repost my clarifications wherever your transcript has been posted.

    If folk are submitting comments to the Committee before November 18, they need be clear that for ICD-10-CM, it is not the case that the current proposal has CFS destined for the somatoform chapter (Chapter 5) but destined for retention in the R code chapter for "Symptoms and signs and ill-defined conditions" - that's Chapter 18 in ICD-10-CM.

    It is still a dustbin diagnosis for CFS (or CFS NOS, as it is currently coded as for ICD-10-CM).

    So I think it's important that this is clarified asap.

    Otherwise, if people opposing the current proposals (as per the ICD-10-CM release for 2011) write into the Committee saying they object to CFS being coded under somatoform, the Committee can respond that it isn't and that it is currently destined for the R codes under R53 Malaise and fatigue.

    So those planning to submit comment and those discussing the issue need the right information on which to base their written objections.


    Suzy

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